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Huntington's Disease: What Families in Hyderabad Need to Know — and Why Specialist Care Changes Everything
Expert Huntington's Disease diagnosis, genetic counselling, and specialist care at KIMS Neuroscience, Hyderabad. HD is entirely inherited, if a parent has it, each child has a 50% chance. Early specialist care saves and extends lives.
Neurodegenerative Disorders · Genetic Brain Conditions
Neurology · Neuropsychology · Genetics
Tetrabenazine · Deutetrabenazine · Psychiatric medications · Physiotherapy · Genetic counselling
Autosomal dominant — each child of an affected parent has a 50% chance of inheriting HD
Huntington's Disease is the only major neurodegenerative condition caused entirely by a single inherited genetic mutation. An abnormal expansion of the CAG repeat sequence in the HTT gene on chromosome 4 produces a toxic huntingtin protein that progressively destroys neurons in the striatum, causing chorea (involuntary movements), cognitive decline, and psychiatric symptoms. Every person who inherits the expanded gene will develop the disease. If one parent has Huntington's Disease, each child has exactly a 50% chance of inheriting it — regardless of sex or birth order.
- What it is
- Inherited brain condition caused by a single gene mutation (CAG repeat in HTT gene). Causes involuntary movements (chorea), cognitive decline, and severe psychiatric symptoms over 10–25 years.
- Inheritance rule
- One parent with HD = 50% chance per child. No exceptions. Autosomal dominant. Affects men and women equally.
- Estimated Indian burden
- 40,000–70,000 people in India. Indian studies report average survival of 7 years from onset vs 24 years in Europe — gap caused by preventable complications (suicide, falls, aspiration).
- Can it be detected before symptoms?
- Yes. Predictive genetic testing (blood test) identifies the expanded gene before any symptoms. Available at KIMS with full genetic counselling before and after. A deeply personal decision — not taken without support.
- Most dangerous symptoms
- Suicide risk (directly assessed at every KIMS appointment) · falls · aspiration pneumonia — all preventable with specialist care.
- Treatment at KIMS
- Tetrabenazine/deutetrabenazine for chorea · SSRIs for depression · antipsychotics for psychosis · physiotherapy · speech and swallowing therapy · genetic counselling for whole family.
- Contact KIMS
- 040-44885000 · Genetic counselling available · No referral required
| Fact | Details |
|---|---|
| Gene | HTT gene · Chromosome 4 · CAG repeat >40 — disease will develop · 36–39 repeats — reduced penetrance |
| Inheritance | Autosomal dominant · 50% risk per child of an affected parent · Anticipation possible (father-to-child transmission can increase repeat length) |
| Three symptom types | Movement (chorea → rigidity as disease progresses) · Cognitive (planning, slowed thinking) · Psychiatric (depression 91% of Indian patients, suicide risk) |
| Indian survival data | Average 7 years from onset in India vs 24 years in Europe — gap is due to preventable complications, not disease severity |
| Predictive testing | Blood test for CAG repeats · Available at KIMS · Full pre-test and post-test counselling mandatory · Both testing and not testing are valid choices |
| Family planning options | Preimplantation genetic testing (PGT) via IVF · Prenatal testing (amniocentesis or CVS) · Both available through KIMS genetics team |
| Contact | 040-44885000 · neuroscience@kimshospitals.com · Genetic counselling for whole family included |
About This Condition
What Is Huntington's Disease?
Huntington's Disease is a brain condition unlike any other in this list because every single case, without exception, is caused by an inherited gene. It is not influenced by lifestyle, diet, or environment. It is not bad luck in the usual sense. It is a specific inherited genetic fault that damages and progressively destroys brain cells, producing a combination of uncontrolled involuntary movements, cognitive decline, and significant psychiatric symptoms that worsens over 10–25 years.
The gene responsible for Huntington's Disease is called HTT, and it sits on chromosome 4. In people with Huntington's, a section of this gene has an abnormal number of repeated sequences too many repetitions of a three-letter DNA code (CAG). The more repetitions, the more toxic the protein produced by this gene becomes to brain cells and the earlier in life symptoms typically begin.
Huntington's Disease is the only major neurodegenerative condition that affects men and women equally, at any age (though most commonly between 30 and 50), and that passes directly from parent to child with 50% probability. A parent with Huntington's Disease has a 50% chance of passing the gene to each of their children regardless of whether previous children were affected or not. This mathematical certainty, and everything it implies for family planning and personal decision-making, is one of the most important things for families to understand and is a central part of what genetic counselling at KIMS Neuroscience, Hyderabad addresses.
In India, an estimated 40,000 to 70,000 people are thought to have Huntington's Disease. Many go undiagnosed or are misdiagnosed with a psychiatric condition for years. An Indian study found that the average time from symptom onset to correct diagnosis was over five years and that average survival from symptom onset was just seven years, compared to 24 years in studies from Europe. The researchers were clear about why: most of the deaths were from preventable causes suicide, injuries from falls, and aspiration pneumonia all of which are directly addressable with the right specialist care.
At KIMS Neuroscience, Hyderabad, we provide the specialist assessment, genetic counselling, and ongoing multidisciplinary management that Huntington's Disease demands.
Book a Consultation
Speak directly with the KIMS Neuroscience team. No referral required. Monday to Saturday.
040-44885000International enquiries: info@kimsneurosciences.comWhat Are the Symptoms of Huntington's Disease?
Huntington's Disease affects three areas of brain function simultaneously: movement, thinking, and mental health. These three symptom groups can begin in any order which is one reason it is frequently misdiagnosed in its early stages.
Movement Symptoms
The most recognised movement symptom of Huntington's is chorea a word derived from the Greek for "dance." Chorea means involuntary, unpredictable, flowing movements that the person cannot control or stop. These movements can affect the face (grimacing, eye blinking), the hands and fingers, the torso, and the legs. They often begin as what looks like restlessness or fidgetiness small, subtle movements that onlookers might initially dismiss. Over time, they become more pronounced and harder to manage.
As the disease progresses, movement tends to shift from the flowing quality of chorea to a stiffer, more rigid pattern muscles become tighter, movement becomes more effortful, and falls become an increasing risk. Swallowing eventually becomes affected, which is one of the most serious late-stage complications.
Other movement problems include:
• Slurred speech — the muscles controlling speech are affected, making communication progressively more difficult
• Difficulty swallowing — a major risk for aspiration pneumonia in the later stages
• Changes in gait and balance — increasing unsteadiness and risk of falls
• Impaired eye movements — difficulty controlling voluntary eye movements is an early and consistent finding
Thinking and Cognitive Symptoms
Cognitive changes in Huntington's are different from the memory-dominated decline of Alzheimer's Disease. In Huntington's, the thinking problems that tend to emerge first include:
• Difficulty organising and planning — sequencing tasks, managing finances, following multi-step instructions
• Slowed thinking — taking longer to process information and respond, even when the answer is known
• Impulsive decision-making — acting without thinking through consequences
• Rigidity of thinking — difficulty switching from one task or idea to another
• Concentration problems — difficulty sustaining attention on a task
Memory, particularly for recent events, is eventually affected but typically later in the disease course than in Alzheimer's Disease.
Psychiatric and Behavioural Symptoms
This is the aspect of Huntington's Disease that most families are least prepared for, and that most directly affects quality of life and safety. An Indian study found that 91% of Huntington's patients had psychiatric symptoms, a striking figure that underlines how central these symptoms are to the condition.
• Depression — one of the earliest and most common symptoms. It requires direct treatment, not just support
• Anxiety — often appearing alongside or before depression, sometimes as the first recognised symptom
• Irritability and anger outbursts — sudden, disproportionate frustration or aggression
• Apathy — a profound loss of motivation and initiative
• Obsessive and compulsive behaviours — rigid routines, repetitive questions, difficulty coping with change
• Psychosis — delusions or hallucinations may develop in later stages
• Suicidal thinking — must be directly assessed and managed at every clinical contact
Juvenile Huntington's Disease
In approximately 5–15% of cases, Huntington's begins before the age of 20. Juvenile HD tends to progress faster than adult-onset disease and may look different instead of chorea, it more commonly presents with rigidity, slowness, and behavioural changes. School performance declines, behaviour changes, and seizures may occur. If a child or teenager in a family with known Huntington's Disease develops unexplained movement, behavioural, or learning problems, specialist assessment is essential.
What Causes Huntington's Disease?
Huntington's Disease is caused by a single change in a single gene an expansion of a CAG repeat sequence in the HTT gene on chromosome 4. This change is inherited directly from a parent who carries it. There are no other causes.
How the Gene Works — In Plain Terms
Everyone has two copies of the HTT gene. In most people, the CAG sequence repeats between 10 and 35 times, a normal range that produces a functioning huntingtin protein.
In people with Huntington's Disease, one copy of the gene has an abnormally high number of CAG repeats 40 or more. This produces an abnormally shaped huntingtin protein that is toxic to brain cells, particularly in a region called the striatum, which controls movement, mood, and cognition.
These cells are damaged and gradually die, producing the symptoms of the disease.
The number of CAG repeats matters:
• 36–39 repeats — a grey zone. Some people in this range develop HD, others do not
• 40 or more repeats — HD will develop in that person's lifetime, if they live long enough
• 60 or more repeats — associated with juvenile-onset HD
The Inheritance Pattern — What It Means for Your Family
Huntington's Disease is autosomal dominant meaning only one copy of the expanded gene is needed to cause the disease.
This has a clear and direct implication: if one parent has the expanded gene, each of their children has a 50% chance of inheriting it. This is true for every child, independently a coin flip each time, with no "memory" of previous results.
This 50/50 probability applies whether the parent is a biological father or mother. It applies equally to sons and daughters. It does not matter whether previous children were affected or unaffected.
There is one additional phenomenon worth knowing: anticipation. In some families, the number of CAG repeats increases slightly from one generation to the next when passed through the father. More repeats means earlier onset in the next generation. This is why Huntington's Disease sometimes appears to get progressively earlier across generations in certain families.
Diagnosis at KIMS
How Is Huntington's Disease Diagnosed at KIMS?
Huntington's Disease has the advantage of being one of the few neurodegenerative conditions that can be definitively confirmed with a single blood test. But the path to that test and the conversations and support that surround it require specialist care.
Clinical assessment first
When a person comes to KIMS Neuroscience, Hyderabad with possible Huntington's symptoms, the specialist first takes a detailed history covering the nature and timeline of movement, cognitive, and psychiatric symptoms, and critically, whether there is a family history of Huntington's Disease or of unexplained movement disorder in previous generations. A neurological examination assesses the pattern of movements, eye movements, reflexes, and coordination.
The genetic test — the definitive diagnosis
A blood test measuring the number of CAG repeats in the HTT gene is both highly sensitive and highly specific for Huntington's Disease. A result of 40 or more CAG repeats on one copy of the gene confirms the diagnosis. This test is available at KIMS Neuroscience, Hyderabad.
Predictive genetic testing
For people who have a family history of Huntington's but do not yet have symptoms, this same genetic test can be used as a predictive test telling them whether they have inherited the expanded gene before symptoms begin. This is an intensely personal decision, and one that should never be undertaken without specialist genetic counselling beforehand and psychological support around it.
Genetic counselling — before and after testing
At KIMS Neuroscience, genetic counselling is offered to all individuals considering Huntington's Disease testing, whether symptomatic or not. Counselling covers: what the test can and cannot tell you, the implications of a positive or negative result for you and your family, the emotional and practical aspects of knowing versus not knowing, options for family planning including preimplantation genetic testing if future pregnancies are being considered, and support resources for families at risk. A positive result for an asymptomatic person is not simply a medical finding it changes the way a person sees their entire future. It must be handled with the full weight of specialist support, not a phone call with results.
Brain MRI
An MRI brain scan is typically performed at diagnosis. In established Huntington's Disease, it shows characteristic shrinkage of the striatum particularly the caudate nucleus, the region most affected early in the disease. The scan also provides a baseline for tracking progression over time.
Neuropsychological assessment
A detailed assessment of cognitive function maps specific pattern of thinking difficulties and provides a documented baseline. This is important both for management planning and for monitoring change over time. It is also needed to assess capacity ability to make informed decisions which has legal and practical implications in HD.
Psychiatric assessment
Given the high rate of depression, anxiety, and suicidal thinking in Huntington's Disease, a formal psychiatric assessment is part of every new diagnosis at KIMS. Identifying and treating psychiatric symptoms early is one of the most impactful things a clinical team can do for a person with HD and, as the Indian data makes clear, one of the most neglected.
Treatment
How Is Huntington's Disease Treated at KIMS?
There is currently no treatment that cures Huntington's Disease or stops the progression of the underlying brain cell loss. But this does not mean that treatment is limited or ineffective. The difference between a person with Huntington's who receives comprehensive specialist care and one who does not is measurable in years of function, quality of life, and as the Indian survival data shows sometimes in life itself.
Treating the movement symptoms
The involuntary movements of chorea can be significantly reduced with medication. Tetrabenazine (brand name Nitoman) reduces the amount of dopamine available in the brain's movement circuits, which reduces chorea. It is the most widely used medication for this purpose. Side effects include depression, drowsiness, and in some patients, worsening of swallowing so it is started at a low dose and adjusted carefully. Deutetrabenazine is a newer version of tetrabenazine with a longer action and somewhat better tolerability. It is available in India. As the disease progresses and chorea gives way to rigidity, other movement medications may be adjusted accordingly.
Treating the psychiatric symptoms
Depression, anxiety, irritability, and suicidal thinking are the symptoms most likely to harm a person with Huntington's Disease in the short term and the most directly treatable. Depression is treated with SSRIs (such as sertraline or fluoxetine) as the first-line approach. These are effective and generally well-tolerated in HD. Mirtazapine is useful when sleep disturbance and appetite loss are prominent. Anxiety responds to SSRIs and, in some cases, buspirone. Irritability and aggression can be helped by SSRIs and, in severe cases, low-dose antipsychotics. Psychosis is treated with atypical antipsychotics quetiapine is typically preferred. Suicidal risk is directly assessed at every clinical contact at KIMS. If a person with Huntington's expresses thoughts of suicide or self-harm, immediate psychiatric input is arranged. Families are educated about warning signs and given clear guidance on what to do if they are concerned.
Physiotherapy and rehabilitation
Physiotherapy is not an optional extra in Huntington's Disease it is one of the most evidence-backed interventions for slowing functional decline. Targeted physiotherapy programmes improve gait stability, reduce fall risk, maintain strength and flexibility, and help manage the transition from chorea-dominant to rigidity-dominant movement patterns. Early referral to our physiotherapy team at KIMS is strongly recommended.
Speech and swallowing therapy
A speech and language therapist plays two important roles in Huntington's care. First, they help maintain communication as speech becomes progressively affected developing strategies and, when necessary, alternative communication tools. Second and critically they assess and manage swallowing. Swallowing difficulties in Huntington's carry a real risk of food or liquid entering the lungs (aspiration), causing pneumonia. Regular swallowing assessment and dietary modification to the right texture and consistency reduces this risk significantly.
Occupational therapy and home safety
Falls are a major cause of injury and death in Huntington's Disease. Our occupational therapy team assesses the home environment and recommends specific modifications removing trip hazards, installing grab rails, recommending appropriate footwear, and providing equipment to support independence in daily activities. A home safety assessment should happen at diagnosis, not after the first serious fall.
Nutritional support
Many people with Huntington's Disease lose weight partly because chorea burns significant calories, partly because swallowing becomes increasingly effortful, and partly because of depression and reduced motivation to eat. Maintaining body weight improves energy, strength, and immune function. Our dietitian works with HD patients to ensure adequate caloric intake at every stage of the disease.
Genetic counselling for the family
Following a Huntington's diagnosis, the question that hangs over the family is immediate and personal: which of the patient's children, siblings, or other relatives may have inherited the gene? At KIMS Neuroscience, we offer genetic counselling to family members who wish to consider predictive testing. This is a deeply personal decision some people want to know, others prefer not to. Both choices are valid and respected. What matters is that the decision is made with full information, proper support, and time to think.
Family therapy and psychological support
Huntington's Disease is a family disease. It changes relationships, roles, financial circumstances, and future plans for every person in the household. Psychological support individual counselling for the patient, couples counselling where appropriate, and support for children in the family who are at 50% risk themselves is available through our neuropsychology service at KIMS.
When Should You Seek a Specialist Assessment for Huntington's Disease?
Come to KIMS Neuroscience, Hyderabad if you or your family notices any of the following. Early specialist assessment means earlier diagnosis, earlier treatment, earlier access to multidisciplinary support, and better long-term quality of life.
One message for families who carry the HD gene: Choosing whether to have predictive genetic testing is one of the most significant decisions a person can face. There is no right answer that applies to everyone. Some people want to know so they can plan. Others do not want to live with the knowledge. Both positions are completely understandable. What we ask is that you do not make this decision alone, or based on an internet search result. Come and talk to our genetic counselling team at KIMS, the conversation costs nothing and carries no obligation.
Appointments at KIMS Neuroscience can be booked by calling 040-44885000. You do not need a referral letter.
You have a parent, sibling, or grandparent with a confirmed or suspected Huntington's Disease diagnosis, and you are considering genetic testing
You or a family member is developing unexplained involuntary movements jerking, writhing, or restless movements that the person cannot control
Personality or behaviour has changed in a person with a family history of HD particularly new depression, anxiety, irritability, or impulsive behaviour
A child or teenager in a family with known HD is showing unexplained changes in behaviour, school performance, or movement
You have been diagnosed elsewhere and want a specialist second opinion or access to comprehensive multidisciplinary care
You are planning a pregnancy and have a family history of Huntington's Disease
What to Expect — Living with Huntington's Disease
Huntington's Disease is progressive it worsens over time. On average in Western populations, people live 10–20 years after the first symptoms appear. In India, studies have found shorter survival largely not because the disease is more severe, but because complications that are preventable go unmanaged: suicides that could have been prevented with psychiatric care, falls that could have been reduced with physiotherapy, aspiration pneumonia that could have been avoided with swallowing management.
This is the most important message for families in Hyderabad and across Telangana: the difference between specialist, multidisciplinary Huntington's care and no care or general care from a team not experienced with HD is not marginal. It is measured in years of independent life, years of meaningful relationship with family, and in some cases, whether a person survives to a stage where they can still express who they are.
The early and middle stages of Huntington's Disease, with well-managed psychiatric symptoms, controlled chorea, and maintained physical function, are often periods when people with HD continue to work, be present for their families, and live meaningfully. Planning ahead for the time when more care will be needed is best done in this window.
For families, the emotional journey of Huntington's Disease is compounded by the genetic shadow it casts over children and siblings. Supporting those family members answering their questions, facilitating counselling, and giving them access to testing if they choose it is part of what KIMS Neuroscience provides as a whole-family service.
Related Conditions
Huntington's Disease belongs to a broader family of genetic and neurodegenerative disorders:
FAQs
Frequently Asked Questions
Affected by Huntington's Disease — as a patient, a carer, or a family member at risk?
KIMS Neuroscience, Secunderabad offers specialist Huntington's Disease assessment, genetic testing, genetic counselling, and comprehensive ongoing care. Whichever stage of this journey you are at wondering about your own risk, newly diagnosed, or years into caring for a family member our team is here. You do not need a referral letter.
info@kimsneurosciences.com